A blog about my journey - through life, family, our non-profit, Africa, poverty, justice, nature, faith, hope & the calm that can be found though out.

Friday, January 10, 2014

Beyond My Understanding

Three years ago over the MLK holiday, we went to Breckenridge for the long weekend. We had a great day skiing and another day sledding and were worn out by the end of the weekend. We had no idea that this would be the last time in the next three years where we would enjoy any real outdoor physical activity together as a family. The following weekend, Ryan (age 11 at the time) came down with a horrible flu-like illness, but it lasted for three weeks. During this illness, new symptoms showed up like horrible back pain, feet and leg pain, brain fatigue to the point that he could not read anymore and many other symptoms. From that point on, our life changed.

Ryan has been sick for three years now with Lyme Disease. We were told by 6 doctors and Denver Children's Hospital that there was no way he had Lyme - it must be Chronic Fatigue Syndrome brought on by a virus. When we stepped out of the main stream medical system and visited doctor #8, Ryan was diagnosed correctly. For the first year and a half, we tried to keep him in school, but he only attended about 20% of the time. Last year I attempted to homeschool him, but there were many days when he was too sick to handle school, and his brain would not function normally. Other days, he woke up feeling pretty well and was able to hang out with friends once in awhile or take part in some activity. These are the days that I captured photos of him, because he looked just like he always did when he was healthy. (On a side note: there is a great post here about what it is like to be chronically ill and how you don't look sick to others,

The past three years have been the most difficult years of my life. I already struggle with anxiety/panic disorder and fear, so all of this has been extremely difficult for me - I think I might have gone off the deep end without my anxiety meds. It is so hard to watch your child suffer so much, for so long and see his friends all grow up and experience life, while he lies in our bed day after day. It is also hard to be a person who struggles with fear and question if he is going to make it through. I already had enough issues before this started. I have spent many days and nights crying out to God. I have sobbed on my bathroom floor. I have given up, regained faith and strength, and lost it all over again a couple of days later. I am angry with God and then later, feel his presence surrounding me and I know that He is still there. I have listened to our younger son, Carter, on multiple occasions, cry for hours as he talks about how he has lost his brother and best friend because he can never play with him, and my heart breaks a little more each time.

While I have been on a roller coaster of emotions this entire time, Ryan has been steadfast in his faith and is so sure of God’s plan for his life and of God’s love. I can honestly say that he has not been angry even once over his condition. He cries and gets frustrated, but has never said it isn’t fair or I am upset with God. How can it be that I struggle so much and my 14-year old son does not falter in his faith? How can he have so much empathy and compassion for others when he is so miserable? He remembers to pray for everyone we know who is sick or having a hard time in life, and also gives generously to our ministry, E4 project, and other organizations such as Free Wheelchair Mission, Lifewater International and World Vision to help children in Africa. All he wanted for Christmas was money for the organizations he supports - he is 14! I cannot even imagine having faith like that and putting it into action at such a young age. For awhile, I thought he was keeping his emotions locked inside him, but I have come to realize that God is doing an amazing work in his life and has guarded him in every way during this trial.

At one of my lowest points last year when Ryan was very sick, I was talking with a friend again about Ryan and my struggles with my faith. God used her in our conversation that day to bring me out of my depression and see things in a new light. She knows Ryan well, and she reminded me that God knew before Ryan was born that he would go through this trial. That God has equipped Ryan with what he needs to get through and that Ryan probably feels His presence and strength in ways that I cannot imagine. God is shielding him and filling him with a peace that only comes from Him. Her words really led me to a turning point and I feel that I really let go and gave our trials over to God as best as I could (again). A couple days later my son spoke words to me that confirmed that God was using my friend that day to speak truth into my life and to help me understand the depth of His love for Ryan.

We read the teen edition of Jesus Calling by Sarah Young. While the passage we read applies to all of us, it seemed that night as if Ryan and our family were the only one in the world that it was written for (the passage is quoted below). We talked about embracing the challenges that God puts in our lives and finding blessings along the way and choosing to trust Him in all situations. Ryan has been open about how much he trusts God and knows that God is going to use this trial in his life, but this brought me to tears (which obviously has not been hard to do). As we talked about how this reading related to him, he said he too felt like it was written specifically to him. He then went on to tell me that it pretty much sums up how he feels and his faith in Christ through everything. He shared with me that on his good days, he thanks God for giving him that day. He said, “Mom, when I thank God for my good days, I have a feeling in me that is more than happiness. I can actually feel joy in my heart – joy that I know comes from God.” I could not be prouder of this amazing teenager and I know that God is covering him in His love and protection – it definitely surpasses my understanding. I cannot wait to see how God uses him in the future.

Jesus Calling -- "Strive to trust Me in more and more areas of your life. Anything that tends to make you anxious is a growth opportunity. Instead of running away from these challenges, embrace them, eager to gain all the blessing I have hidden in the difficulties. If you believe that I am sovereign over every aspect of your life, it is possible to trust me in all situations. Don't waster energy regretting the way things are or thinking about what might have been. Start at the present moment - accepting things exactly as they are - and search for My way in the midst of those circumstances. Trust me like a staff you can lean on as you journey uphill with me. If you are trusting in me consistently, the staff will bear as much of your weight as needed. Lean on, trust, and be confident in Me with all your heart and mind."

And yes......Ryan gave me permission to share this with all of you. I hope it helps someone out there with struggles that you are facing in your own life. Below is a photo of him struggling through homeschool last year. After 9 doctors, we finally found the best one. Ryan is improving and is back in school full time. Thankful and blessed. I would love to say that my struggles with my faith are gone as he is getting better, but I am only human......I have grown a lot, but always have a ways to go.

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Family

E4 Project - our non-profit

Defending the cause of the poor and needy in the Democratic Republic of Congo and Gabon, Arica

About Me

wife, mom of 2 boys, co-founder of a non-profit (E4 Project) that serves in Gabon and the Democratic Republic of Congo. My heart breaks for those living in poverty, suffering, sickness and oppression. I love wildlife and nature and am passionate about environmental issues. I have a son who endured for over 5 years with Lyme disease. I write about all these things as well as trials, struggles and joy in our family's life – and anything else that seems relevant. Thanks for stopping by - Brynn